Mr Johnson said despite the pain Connie's loved ones were feeling in her final days, he said it was also a "beautiful time".

"We all know that life is about much more than accolades or trophies, but the fact remains my sister has raised more than $7 million from her bedside while most other people sit on their hands and complain about not having a cure yet.

"Through all the battles she has had so many rainbows and she's supported by a lot of people and she feels that and it's buoyed her a lot.

"We were told she was going to die last night but she's not ready yet – she's enjoying her life too much.

"In her words 'there is still so much to do'."

Mr Johnson said Connie fought through her fatigue to stay awake for a short time to reflect on the moment with her brother - and their friendly sibling rivalry was as strong as ever.

"She's upstaged my Gold Logie," Mr Johnson said.

"I'm going to have to work a bit harder."

Despite maintaining his sense of humour, he had one very serious message to spread to all women.

"Connie has appreciated being recognised for the fact she's tried to encourage every single young mum in this land to check their boobs," he said.

"And if they can check them on the night that she dies, she'll be very happy."

'She is most deserving of our nation's gratitude'

During the ceremony at Calvary Clare Holland House, Sir Peter described Connie as "a determined, inspirational figure and a great Australian".

Secretary to the Governor-General, Mark Fraser, read out the official citation explaining Connie was awarded the medal for her service to people with breast cancer:

"Mrs Johnson is a person who is simply inspirational. Her creation and leadership of the Love Your Sister Village has done much to encourage other Australian women to undergo regular screening and has also raised vital funds to support cancer research.

"She has become one of this nation's foremost advocates of the importance of early detection and the need to find a cure. In the process she's rallied many others to join with her to assist this endeavour.

"Through her drive and determination, and in the face of significant obstacles, she's achieved in a few short years what most people could only hope to achieve in a lifetime.

"Mrs Johnson's efforts for our community will endure and make her most deserving of our nation's gratitude and admiration."